Aa
hurry up and wait
I am 40 yrs old, 3 wks ago I had my first mammo with my Mom who is a 12yr BC survivor. To my suprise, that afternoon I was told I need to come back for more. They said their first opening was in 2 wks, I fought got appt in 4 days. Three clusters of microcalcs were found on rt breast. Surgeons first opening 3 wks, I fought got appt in 7 days. Surgeon said I need stereotactic biopsy. They said first opening 3 wks, I fought got appt in 6 days. Is it only me, but the only thing going through my mind is I've got BC and these people think it's O.K. to hurry up and wait for every appt. These past 3 wks have been torture. I work for the hospital that will be doing these tests, does anyone have any ideas on how these waiting times between each step can be minimized?
This discussion is related to microcalcifications and breast cancer..
This discussion is related to microcalcifications and breast cancer..
Nope, not kidding....the attitudes I get from the doctor's offices is what really p@##*s me off. They rush rush rush on the phone, in the office, in the exam room, it's really ridiculous. The superiority complex they all have is uncalled for. I think it's a front because they know they have over-extended themselves and they're embarassed that it IS taking them so long to schedule a standard outpatient biopsy! I hope they never have a need for me or my expertise, God help them.
My sister had to go back home, she was here for almost 3 weeks. They kept stringing us along and she didn't want to fly back home and turn around and come right back down. She's coming back on May 11th for the surgery and staying for another week. I'm a very anxious person to begin with and this just makes it 100 times worse.
I know some of you have MUCH bigger issues and I appreciate the friendship and time everyone puts into this.
Something needs to change with this system....
My sister had to go back home, she was here for almost 3 weeks. They kept stringing us along and she didn't want to fly back home and turn around and come right back down. She's coming back on May 11th for the surgery and staying for another week. I'm a very anxious person to begin with and this just makes it 100 times worse.
I know some of you have MUCH bigger issues and I appreciate the friendship and time everyone puts into this.
Something needs to change with this system....
You have got to be kidding me!!! It's time to take some serious action. What the system is doing to you and others is BS.
Is your sister still with you? I know that it's hard to think with a clear head when this is the only thing that's on your mind, maybe your sister can call and like mamaboulet said be politely pushy. I live in NY state and my politely pushy may not have been so polite. Every doctor, nurse, radiologist etc. has a boss I think it's time you go over their head and remind them they have moms, sisters, daughters....would this be the treatment they would expect?!
Is your sister still with you? I know that it's hard to think with a clear head when this is the only thing that's on your mind, maybe your sister can call and like mamaboulet said be politely pushy. I live in NY state and my politely pushy may not have been so polite. Every doctor, nurse, radiologist etc. has a boss I think it's time you go over their head and remind them they have moms, sisters, daughters....would this be the treatment they would expect?!
Hi, I'm sorry you have to go through this too. My initial mammogram was Feb 17th. They FINALLY scheduled me for May 12th. When they called to go over pre-op instructions, they mentioned that the surgeon had written the order to biopsy only 1 area of the "large area of amorphous clustered microcalcifications" in the right breast. I questioned them about the nodule on the left breast that lit up on the MRI. According to the Radiologist's report, they were supposed to biopsy TWO areas of the micro calcs AND the nodule on the left (I have a lymph node on the left that shows on the ultrasound and 2 lymph nodes on the right too). They told me to call the Radiologist, I did and he's checking it out and calling me back. I swear you have to watch everything. This doctor is supposedly one of the best in Florida, I guess that's why I keep putting up with this madness. I have the Birads 4 report from the radiologist, so I know what he said to do!
Get this... while on the phone with him, he told me, point blank..."I think it's cancer in your right breast and it's in the ducts and the clusters are spread out over the whole breast, so we'll probably have to remove the breast and replace it with an implant, you already have implants anyway". I was shocked to say the least. Maybe they are just trying to get me ready for the news? From what I understand they call you on the phone with the results too. Oh boy. It'll be almost 3 months since I found the lump, I just pray that if it is something, the waiting didn't make it worse. My mind went blank when he said that.
It will be a long weekend for you but I hope it goes by fast. Maybe think of something fun to do to keep your mind off of it. I know, easier said than done. I can't stand the waiting either. Good luck to you and keep us posted.
I've never heard of any symptoms of breast cancer other than the obvious lumps, skin changes, etc. Maybe someone else has heard of that.
Take care
Get this... while on the phone with him, he told me, point blank..."I think it's cancer in your right breast and it's in the ducts and the clusters are spread out over the whole breast, so we'll probably have to remove the breast and replace it with an implant, you already have implants anyway". I was shocked to say the least. Maybe they are just trying to get me ready for the news? From what I understand they call you on the phone with the results too. Oh boy. It'll be almost 3 months since I found the lump, I just pray that if it is something, the waiting didn't make it worse. My mind went blank when he said that.
It will be a long weekend for you but I hope it goes by fast. Maybe think of something fun to do to keep your mind off of it. I know, easier said than done. I can't stand the waiting either. Good luck to you and keep us posted.
I've never heard of any symptoms of breast cancer other than the obvious lumps, skin changes, etc. Maybe someone else has heard of that.
Take care
That is absolutely crazy! Unfortunately I know where your coming from. I am presently waiting for results from a mammotome done on April 21st. My initial mammogram was done on Feb 7th I got called back a few days later so they could do another mammogram. It took over a week for my doctor to call me so I could make an appt to see her, so she could tell me I needed to go for a biopsy because of microcalcifications in my left breast...couldn't they have just phoned me to let me know? Then somehow, the hospital mysteriously never received the request from my doctor to do a biopsy and my dr.'s office swears they sent it! The original request was supposedly sent March 5th and had I not been a pest, I still would be waiting to hear WHEN my biopsy would be scheduled. The mammotome (done this past Monday) was VERY uncomfortable, it wasn't painful just very sterile and scary and I was in such a weird position I was really uncomfortable. The other thing that bothers me is how many x-rays they took of my breast while I was on the table and after...doesn't exposure to radiation (x-rays) cause cancer??!! Anyways, I've been stressing out about the results, which I won't have until next Monday. I hope that your surgery will now be scheduled quickly. Keep me posted. Does anyone know if ear fullness can be a sign of breast cancer? My left ear feels full or plugged off and on -- its been going on since early February.
You won't believe me if I tell you......I'm still waiting. I have now lost 20 pounds and I believe I have a stomach ulcer. No kidding. I went to all my doctors for the clearance letters for general anesthesia they made me do an EKG, an echocardiogram, a nuclear stress test, blood work, etc., etc all in one week and I had my letters back to the surgeon last monday 4/14/08. I called and they said, "Oh, the girl who schedules the surgeries has been out on vacation", she's back NOW and will call you to schedule! They never told me this and I feel like they sent me on a wild goose chase for the clearance letters just to stall for time until their surgery scheduler got back from vacation. The last I heard was Friday afternoon 4/18/08 that she would call me either Friday afternoon (she didn't) or Monday to schedule. I am sooooo sick of this whole thing. I found the lump on February 17th....2 solid months of worry and waiting.
How has post op been? My mother gave me the same advise while I was going through this ordeal. You HAVE to be your own advocate and education is the key.
I just have to add my 2 cents here. My biggest concern over my ultrasound guided core needle biopsy was the anxiety. I really think a great solution would be nitrous oxide like they use in the dentist office. It wears off as soon as you stop inhaling it so if you had to drive you could. When I asked if I could have something prior to them starting they told me that was something that would have to have been ordered by my primary care physician prior to the biopsy wish they would have told me that before I was laying on the table! He wasn't really even in the loop at that point anyway. Of course , I was vocal about doing something to encourage some improvements in that area. Aside from that, my care has been outstanding and I am fortunate to live in an area with a "top 100 in the nation" hospital.
Here's how it went for me. I had my routine mammogram. Got a call back about 10 days later that I needed to come back in. The call is made by a scheduler who is not allowed to give you any info other than that there was an abnormality that needed to be looked at further and the standard reassurance that it's just a precaution. So I went in for a repeat with ultrasound at our newly opened breast center. Being that this was a diagnostic procedure the radiologist looked at my films right away and did the ultrasound himself. I knew before I left that I needed to come in for a biopsy. He took me in to a consultation room and showed me my films and the ultrasound video. I had a biopsy scheduled within 5 days and the initial results within 2 days. But the interventional radiologist who performed the biopsy warned me right then that the characteristics of it on ultrasound alone were worrisome enough that he was going to recommend in his report that it be surgically removed regardless of what the pathology report said. So by that evening I had a call at home from my Primary Dr. with a referral to a surgeon and an appointment the next day! That ended up being a waste of time though since he couldn't even discuss a plan of action without the pathology report. So I was back in again 4 days later where he discussed my options; partial vs total mastectomy with or without immediate reconstruction. He recommended a consultation with a radiation oncologist. I knew almost immediately that I wanted the total so canceled the appointment with the radiation guy and saw a medical oncologist and a plastic surgeon. My initial mammogram was Feb 4th. My 2nd one was Feb 21st. Biopsy was on Feb 27th. Results received via phone on Feb 29 (because I called my Dr. and told him to call me as soon as he got them NO MATTER WHAT!). I did not want to wait the weekend. I was back to the general surgeon's office on Mon Mar 3rd, had a 2 1/2 hour consultation with my plastic surgeon on Fri. March 7th. Saw the medical oncologist on Wed Mar 13th. Had my surgery on Good Friday, Mar 21st. The challenge there was coordinating 2 surgeon's schedules. One took off the breast one built the new one. I had a total rt mastectomy with TRAM flap reconstruction and a lift to the left breast.
In retrospect, the turn around time seems pretty quick but it was a time of extreme anxiety and the way I dealt with it was by advocating for myself, being persistent, making "nagging" phone calls, doing hours of research, finding the right care providers, asking everyone for recommendations and seeing that I was sent a copy of all my medical records. I am blessed to have some connections and my brother who works in OR was a great resource from recommending surgeons and anesthesiologists to hand picking the team that was caring for me in the OR. But I do believe that every woman should be able to demand a standard of care that doesn't leave them feeling fearful and anxious. Every woman should feel confident and empowered enough to be an active member in their team of care providers. Educate yourselves, ask questions, insist that they give you the time you need, find a care giver you feel a connection with. Advocate for yourself. Anyone who sees me knows that I am rigorously involved in my own care, want to be educated, and am relentless in my pursuit of information and quality care. If they aren't okay with that then they aren't right for me.
Here's how it went for me. I had my routine mammogram. Got a call back about 10 days later that I needed to come back in. The call is made by a scheduler who is not allowed to give you any info other than that there was an abnormality that needed to be looked at further and the standard reassurance that it's just a precaution. So I went in for a repeat with ultrasound at our newly opened breast center. Being that this was a diagnostic procedure the radiologist looked at my films right away and did the ultrasound himself. I knew before I left that I needed to come in for a biopsy. He took me in to a consultation room and showed me my films and the ultrasound video. I had a biopsy scheduled within 5 days and the initial results within 2 days. But the interventional radiologist who performed the biopsy warned me right then that the characteristics of it on ultrasound alone were worrisome enough that he was going to recommend in his report that it be surgically removed regardless of what the pathology report said. So by that evening I had a call at home from my Primary Dr. with a referral to a surgeon and an appointment the next day! That ended up being a waste of time though since he couldn't even discuss a plan of action without the pathology report. So I was back in again 4 days later where he discussed my options; partial vs total mastectomy with or without immediate reconstruction. He recommended a consultation with a radiation oncologist. I knew almost immediately that I wanted the total so canceled the appointment with the radiation guy and saw a medical oncologist and a plastic surgeon. My initial mammogram was Feb 4th. My 2nd one was Feb 21st. Biopsy was on Feb 27th. Results received via phone on Feb 29 (because I called my Dr. and told him to call me as soon as he got them NO MATTER WHAT!). I did not want to wait the weekend. I was back to the general surgeon's office on Mon Mar 3rd, had a 2 1/2 hour consultation with my plastic surgeon on Fri. March 7th. Saw the medical oncologist on Wed Mar 13th. Had my surgery on Good Friday, Mar 21st. The challenge there was coordinating 2 surgeon's schedules. One took off the breast one built the new one. I had a total rt mastectomy with TRAM flap reconstruction and a lift to the left breast.
In retrospect, the turn around time seems pretty quick but it was a time of extreme anxiety and the way I dealt with it was by advocating for myself, being persistent, making "nagging" phone calls, doing hours of research, finding the right care providers, asking everyone for recommendations and seeing that I was sent a copy of all my medical records. I am blessed to have some connections and my brother who works in OR was a great resource from recommending surgeons and anesthesiologists to hand picking the team that was caring for me in the OR. But I do believe that every woman should be able to demand a standard of care that doesn't leave them feeling fearful and anxious. Every woman should feel confident and empowered enough to be an active member in their team of care providers. Educate yourselves, ask questions, insist that they give you the time you need, find a care giver you feel a connection with. Advocate for yourself. Anyone who sees me knows that I am rigorously involved in my own care, want to be educated, and am relentless in my pursuit of information and quality care. If they aren't okay with that then they aren't right for me.
I am leaving for vacation (much needed). Palm trees and cocktails. Please keep me informed of your situation. Again, my thoughts are with you.
Wow!!! I almost missed your post. Congratulations!!! That is wonderful news. Squeeky wheel gets the grease. And thanks for keeping up the fight. No one should ever have to go through all of this waiting. This forum is a God send to me. The more time I wait, the more educated I become and then the more in charge I feel.
You are so right about the Sterotactic Needle Biopsy. I learned from reading on here that I should take something for anxiety. I took xanax right before and it worked fine. I kept saying to myself before hand....I'm going to be laying with my ear to the table, arms down at my side and my breast in a hole for 2 hours!!!! They tugged and pulled for about an hour and a half before finally telling me that they couldn't do it. Luckily I was in la la land with the meds. It was bearable, but I didn't even get to the needle part. They should prescribe meds to all who are set up for it.
Please let us know what happens with your letter.
Take care
You are so right about the Sterotactic Needle Biopsy. I learned from reading on here that I should take something for anxiety. I took xanax right before and it worked fine. I kept saying to myself before hand....I'm going to be laying with my ear to the table, arms down at my side and my breast in a hole for 2 hours!!!! They tugged and pulled for about an hour and a half before finally telling me that they couldn't do it. Luckily I was in la la land with the meds. It was bearable, but I didn't even get to the needle part. They should prescribe meds to all who are set up for it.
Please let us know what happens with your letter.
Take care
Re: P.S. Yes, all three were. I have two incisions. Here's another thing that really bothers me. That Stereotactic Biopsy was not comfortable. I laid face down on a hard table with my arms down by my side for 2 1/2 hours. I couldn't see anything because my face was turned to the wall. With all the noises my imagination was running wild.
Advise to anyone having a stereotactic biopsy, ask for either an antianxiety med and/or bring an ipod.
Advise to anyone having a stereotactic biopsy, ask for either an antianxiety med and/or bring an ipod.
I found out Friday afternoon my results were benign! I probably made a pest of myself, but I was not going to go all weekend without knowing.
I am a Dental Hygienist at a general dental residency program at a hospital. I am in the process of writing a letter to the Administration of the hospital with my experience and knowing I am not the only one who has had what I will call the "hurry up and wait syndrome". People who are in healthcare need to realize what a horrible feeling it is to think "oh my god, I may have Cancer". I am not going to let this go. I will let you know what kind of response I get. I have a big mouth it's time I use it.
I am a Dental Hygienist at a general dental residency program at a hospital. I am in the process of writing a letter to the Administration of the hospital with my experience and knowing I am not the only one who has had what I will call the "hurry up and wait syndrome". People who are in healthcare need to realize what a horrible feeling it is to think "oh my god, I may have Cancer". I am not going to let this go. I will let you know what kind of response I get. I have a big mouth it's time I use it.
I am a 44 year old, premenopausal woman who has been diagnosed with 8-10 clustered microcalcifications. The radiology report rates it a BIRAD 5. I am amazed with what I have read on this forum. I had my routine mammo on 3/25, They ordered additional views for a week later, and I have an appointment scheduled with the surgeon Monday morning, and they already have a stereotactic biopsy scheduled for later Monday morning before I have even met with the surgeon! From date of my routine to biopsy...13 days! I'm hoping the results come back as timely as everything else has gone. I don't know if the BIRAD rating has anything to do with the expediancy of the appointments, but you should never be put off for weeks at a time. Most of my dealings have been with my gp doctors office...that is where the mammo's were performed.
I am an accountant for several diagnostic radiology centers (none of my procedures were performed at one of these centers--no preferential treatment!). I can assure you not all diagnostic centers have such long waits! Most of our procedures are scheduled in just a few days, not 3 weeks. If you live in a small town, you may not have much choice, but if you live in a large urban area, and you can't get into an appointment as soon as you would like, call another facility or surgeon, whichever the case might be. Or if your gp's office is dragging their feet, either express your concerns (in a polite manner of course!) or switch to a doctor that will take your concerns seriously! Breast cancer is a scary thing, but women's emotions can be even scarier! Good luck to everyone here in their journey!!!
I am an accountant for several diagnostic radiology centers (none of my procedures were performed at one of these centers--no preferential treatment!). I can assure you not all diagnostic centers have such long waits! Most of our procedures are scheduled in just a few days, not 3 weeks. If you live in a small town, you may not have much choice, but if you live in a large urban area, and you can't get into an appointment as soon as you would like, call another facility or surgeon, whichever the case might be. Or if your gp's office is dragging their feet, either express your concerns (in a polite manner of course!) or switch to a doctor that will take your concerns seriously! Breast cancer is a scary thing, but women's emotions can be even scarier! Good luck to everyone here in their journey!!!
Talk about hurry up and wait...I went to see the new surgeon this morning expecting to be scheduled for surgery. She said the micro calcs have to come out and the nodule on the left too. Ok, we knew that. But, she wants more guidance from the radiologists. She called the two radiologists while we were there and left messages, because they gave conflicting information on their reports about the left nodule. One said the nodule WAS on an MRI from 2004 and the new radiologist said it was NOT on there in 2004 and it lit up on the new MRI. Grrrr. She wanted to know why they hadn't just done an ultrasound guided biopsy on it already, and she could do the micro calcs. She's waiting for them to get back to her with a combined report.
In the meantime, I need to get clearance letters from 3 of my doctors before she will do the general anesthesia with the airway tube. Because of my implants she doesn't want me to move at all. It was Friday afternoon and they weren't in so I'll get back on it on Monday. It's getting to be too much and my nerves are shot.
I'm still keeping my fingers crossed for you. This will be a long weekend.
In the meantime, I need to get clearance letters from 3 of my doctors before she will do the general anesthesia with the airway tube. Because of my implants she doesn't want me to move at all. It was Friday afternoon and they weren't in so I'll get back on it on Monday. It's getting to be too much and my nerves are shot.
I'm still keeping my fingers crossed for you. This will be a long weekend.
P.S. I forgot to ask you, did they do the biopsy on all three areas of your microcalcs?
Hi, Thanks for thinking of me this morning. and I'm glad you finally had it done, but.....NEXT WEEK!!!.....did you see the other post from clark116, she had her open biopsy (microcalcs too) on Tues 4/1 and had her results Thursday afternoon 4/3. They were benign, thank God. The only thing I can think of to say is to remind them (the hospital staff) that if it was their sister or mother or friend, would they want to wait that long?
One good thing for me is that my only sister just flew in and is going to be here with me for 2 weeks. She works for an awesome "very large" company and they insisted that she come here and be with me through out this ordeal, they gave her 2 weeks now and more if she needs it. I feel very blessed.
Thanks for thinking of me this morning. Good luck waiting on your results and my thoughts and prayers are with you too. I'll post as soon as I see whats up.
One good thing for me is that my only sister just flew in and is going to be here with me for 2 weeks. She works for an awesome "very large" company and they insisted that she come here and be with me through out this ordeal, they gave her 2 weeks now and more if she needs it. I feel very blessed.
Thanks for thinking of me this morning. Good luck waiting on your results and my thoughts and prayers are with you too. I'll post as soon as I see whats up.
I had the stereotactic procedure done yesterday (April 3). I was told you will probably get the results sometime next week. Are you kidding me? I will, as mamaboulet said, be politely pushy. Good Luck today on your appointment my prayers and thoughts are with you.
Seems to me that women are going to have to get together and demand change. Our local hospice organization recently had a series of dinners for hospice doctors so that they could have several hours to discuss sensitivity issues concerning hospice medical care. Local breast organizations could do something similar to raise doctor awareness. They could put together videos of women telling their biopsy waiting stories. They could compile some statistics about the "post traumatic stress"-like anxiety that many women suffer after these experiences. They could help doctors set up more streamlined protocols for high stress procedures like breast biopsies, including a computer flagging system, a physician's assistant that screens all flagged files for callbacks to lab and/or patient, and up-to-date information for patients concerning things like the BIRADS number, biopsy statistics, specific info about procedures, etc.
I've been through almost the exact same thing in the last month...only to finally get to the stereotactic biopsy and find out I didn't have enough tissue (they said the needle would have gone through and come out the other side). I am now waiting on a surgeon appt to schedule me for 2 sample areas of open excisional biopsy on my several areas of microcalcifications in my right breast and a nodule that lit up on MRI on my left breast. It's been a looooong month that included a 3 day hospital stay for arrhythmias and maximum stress. I don't know how they can do this to us. My Mom had breast cancer too.
My radiologist FAXED my report from the failed sterotactic biopsy to my other surgeon like this, "STAT REPORT - READ IMMEDIATELY" - BIRADS 4A SUSPICIOUS FOR MALIGNANCY- (I got a copy of it, so I know) and he basically told him I needed to have it checked out immediately.....the surgeon's office LOST the report (or ignored it) and he went on vacation!!! Long story short, I have a new oncology breast surgeon and I am "patiently" waiting for the 4th of April @ 10:00 am. You can read my other posts, it has been a nightmare and I STILL don't know anything. Hang in there.
Cowgirl
My radiologist FAXED my report from the failed sterotactic biopsy to my other surgeon like this, "STAT REPORT - READ IMMEDIATELY" - BIRADS 4A SUSPICIOUS FOR MALIGNANCY- (I got a copy of it, so I know) and he basically told him I needed to have it checked out immediately.....the surgeon's office LOST the report (or ignored it) and he went on vacation!!! Long story short, I have a new oncology breast surgeon and I am "patiently" waiting for the 4th of April @ 10:00 am. You can read my other posts, it has been a nightmare and I STILL don't know anything. Hang in there.
Cowgirl
Thank you for your comments. I will go to the hospital administrators and see if I can advocate for others in the same situation. Maybe it will help or maybe it won't but at least I can sleep knowing I tried.
This seems to be the way it is in diagnostic imaging land. Add to that all the doctors who don't have a protocol for timely processing of biopsy results, and you have women living with high levels of anxiety. Sounds like you have found a way to minimize waiting times for procedures. The only way I've found to reduce the waiting time for procedure results is to go to records and sign the form that releases all pathology reports etc directly to you as soon as they are available (which is sooner than the turnaround time for writing up the accompanying report and sending to your doctor, who then contacts you, hopefully). If you have a doctor who takes Friday off when your biopsy report is due, then this may be the route for you, even though you are stuck with a report in medical language. The big drop in waiting anxiety that you get can be worth having to decipher the report first without your doctor, especially if you see words like benign and normal. But if the report is ambiguous or scary, you are still going to have to deal with anxiety, so if your doctor has been responsive about procedure results you might want to wait that extra day.
Definitely being the squeaky wheel helps speed things up a bit, but it also means that you ruffle some feathers (I changed doctors because I ended up hating her and her entire staff, and I think the feeling was mutual).
Probably the best approach is polite pushiness combined with polite pestiness, with occasional flares of righteous anger. lol.
Also, I've commented on here before about women contacting their local breast health organizations to encourage them to discuss biopsy protocols with local breast specialists, with the goal being a more standardized responsive approach to biopsy scheduling and results.
Definitely being the squeaky wheel helps speed things up a bit, but it also means that you ruffle some feathers (I changed doctors because I ended up hating her and her entire staff, and I think the feeling was mutual).
Probably the best approach is polite pushiness combined with polite pestiness, with occasional flares of righteous anger. lol.
Also, I've commented on here before about women contacting their local breast health organizations to encourage them to discuss biopsy protocols with local breast specialists, with the goal being a more standardized responsive approach to biopsy scheduling and results.
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